Down's Syndrome Association, South West Thames Branch

Newletter no. 29, Spring 1997

This is the version edited for web use. Apologies for less than complete presentation here. DSA branch members get a printed version from us. Your contributions, comments, letters are most definitely welcome. Contact the Editor
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Dear Parents and Friends

Please make a great effort to come to the next Branch meeting. The members of your Committee - all parents - spend much time ensuring that the topics included in the programme are those you have requested. We are often in a position to invite experts who may not normally be available to you.

And it isn't just the talks and workshops. The advantages of coming to Branch meetings are manifold - you meet other parents, see other children, share ideas, hopes and fears, and the brothers and sisters who come find that there are other families with a child with Down's syndrome. There is a very wide range of ability in any group of youngsters. The same applies if the youngsters all have Down's syndrome. There is no need to be shy or reticent if you feel your child is less able. By coming you could meet just the person you need. We all need each other to help our baby, child or young adult to achieve their potential in this difficult world.

Relative or professional, a warm welcome awaits you at Horsham. The programme is enclosed.

Shirley Quemby, Editor

BRANCH HON. SECRETARY

The Branch is still in need of a volunteer to fill this important post for 1 - 3 years. It would suit a parent whose child with Down's syndrome is at school. Jill Palgrave or any Committee member will be happy to discuss the commitment with you. It is not arduous but vital we have an understanding contact for new parents and for National Office. Jill says it requires only an hour or so a week (see Branch Newsletter No. 26 - last July - for a detailed description) plus three or four Committee meetings each year (when you are likely to pick up snippets of information of use to you or your family!).

HELP THE BRANCH?

Committee members arrange the Branch's parent information days and share a great deal of help and support (and friendly fun) amongst each other. We are at present all parents. The Branch can pay travel expenses to Committee meetings, which are normally in someone's home on a Sunday afternoon. New faces would be most welcome. You don't have to be a parent - we've had grandparents and a big sister of a child with Down's syndrome in the past. We do, however, always hope a parent will join us whose child is under one year so that your needs and concerns are never inadvertently forgotten or overlooked.

THE EIGHTH DAY

This award-winning Belgian film, with two brilliant co-stars, one with Down's syndrome, attracted about 90 members and friends to the two showings at the Secombe Centre in Sutton at the end of February. Some members in Reigate hope to get the film shown there. Watch out for the striking poster of the two men forehead to forehead. The story is of Georges who has grown up in an institution and not been taught any skills useful for life amongst ordinary people, even to think for himself or use a knife and fork. Indeed all he has learnt is that he gets his own way if he throws a tantrum - a frightening spectacle for the general public.

The writer had cleverly captured many of the minor characteristics often noticed in people with Down's syndrome and there are many instances of the spontaneous sense of fun which many of us enjoy with our own children. The question of finding friends of a similar mental level leaves us with the challenge to ensure our own young person has plenty of opportunities to meet a variety of friends and learns how to start a conversation. Remember "Circle of Support" in the last Branch Newsletter?

We hear there will be a video of The Eighth Day available in May.

ADJUSTABILISERS

These have been designed by a parent whose child has special needs. They help an older child to master a bicycle without someone to hold it up and run. Send s.a.e for details to Good Designs, 60 Gwel Eryri, Llandegfan, Menai Bridge, Gwynedd LL59 5RD. (Tel. 01248 713624). A parent in Sutton would be interested in a secondhand pair of the larger version. Any parents who have finished with a pair of either the standard or the large size could pass them on to another family by putting an offer in our Branch Newsletter. For ideas on how to teach a youngster to balance, see the Branch September Newsletter (No. 27) or contact the Editor.

SUNBEAMS

People with any disability and their close family are invited to join the fun at Horsham Leisure Centre where this Club meets for swimming and general enjoyment of the water, even occasional galas. Only 50p per head. Contact the Leisure Centre for details or ring Maggie Almrott (see Committee list).

FLUMES AT LEISURE CENTRES

An article in the Scottish DSA Autumn NEWS reports the banning of people with disabilities from using a flume at East Sands Leisure Centre at St. Andrews, Fife. Several times excellent swimmers with Down's syndrome were refused access to the water slide on the grounds of health and safety risks. A strong and informed fight by local parents reversed the blanket ban. This story reminds me of Roger's and my first visit to the Tubes at Richmond, now sadly closed. I read over the detailed instructions and made sure he understood the colour coding and he had to use one of the easier tubes first. The 'black hole' was the most advanced. We were each provided with time-related mats which were also colour-coded. He disappeared upstairs and I sat and watched. Big surprise - he came out of the black tube first - perfectly happy! (Why the black one? because his mat was black!). Subsequently I tried and enjoyed them all. On a brief evening visit to a major water park in Belgium our friend Jacques suggested we should protect Roger by sending him down the shute between Jacques and me. Jacques of course didn't know Roger (then 16) was more experienced at flumes than either of us!

OFFICE FOR AUTISM AND ASPERGER SYNDROME

Oaasis offers information and support for families, professionals, students and people with Autism, Asperger Syndrome and other communication disorders. It is part of the Hesley Group which runs residential special schools nationwide. For information telephone Lesley Durston on 01590 676237 or send 8¸" x 4·" size sae for leaflet to Southlands School, Vicar's Hill, Boldre, Lymington, Hampshire SO41 5QB.

DIRECT PAYMENTS

This year the Direct Payments Act will come into force. This Act will enable disabled people to take direct payment rather than a service if they wish. They will then be able to employ the person(s) of their choice to meet their needs.

DATES FOR YOUR DIARY

Saturday 26th April Branch Information Day and AGM, Horsham
Sunday 14th September Branch Committee meeting

DSA CONFERENCES

Information and registration details will be mailed to all members:
Under 5s planned for Saturday 12th April at the Moathouse Hotel Birmingham
Transition to Adulthood planned for Saturday 17th May at the Clarendon Suite, Birmingham.

FAREWELL PETER

The Branch would like to thank Peter Totman for his contribution to the work of the Branch Committee and wish him happiness in his new home.