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Newsletter no.33, Summer 1998

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

Having just taken up the role of Chairman of your South West Thames Branch Committee, I couldn't let the moment pass without expressing the sincere thanks of all of us to outgoing Chairman, Mary Short, and other members who contribute so valuably to the life of the Branch behind the scenes, especially Shirley Quemby for preparing and to Eileen Beard for distributing this Newsletter.

The DSA is going through much change nationally and it is inevitable that this will be reflected at Branch level too. My view is that we are at something of a crossroads in terms of local, 'regional' and national support needs and organisation. Together with our Development Officer, I am hoping that we as a Committee can define what the needs of all our members out there are and do our best to create the framework for meeting them during the course of the next twelve months. I would be delighted to hear your views through whatever medium.

Happy summer holidays to everyone.

MARK ANDERSON

BRANCH VIDEO

Our October edition reported work continuing on the plans to create a Branch video to provide information and guidance for parents and friends of people with Down's syndrome and professionals too. The work and enthusiasm of Branch Hon. Treasurer, Jim Cowie, has achieved an attractive cover for the video and Karen Edmonds and Shirley Quemby have helped to draft the objectives of the video and some scripts. Jim will be pleased to hear from readers who have ideas and offers of expertise. Suggestions of sponsors would be particularly welcome as the more funding we can obtain the better the quality of the end product. £20,000 - £50,000 has been quoted as the probable cost for a one hour product. Drafts are available for comment if you send s.a.e. to Jim.

FAMILY FUN DAY

Please keep free Saturday 14th November for the Branch's first FAMILY FUN DAY. Instead of Fun balloons inviting you to come to talks and workshops, please come and enjoy yourselves. Children's entertainment will enable parents to talk together about your experiences, joys and problems. Committee members will be on hand but informality will reign! The venue at Crawley isn't too far from any Branch member. Please contact a Committee member if you anticipate problems getting there. Friends and professionals will be as welcome as family members of all ages. Note it in your diary now - Saturday 14th November 2 - 6pm. Full details in the next Branch Newsletter. Ideas or offers of help to Alan Mayne.

APRIL OPEN DAY

The Branch will be holding its annual information day for parents and professionals on Saturday 24th April 1999 at Purley near Croydon. Please note the date! Sessions on teeth care and development, behaviour improvement and homoeopathy are planned. It is hoped to arrange an advocacy session for young people with Down's syndrome which will also be of interest to parents.

Members with requests for workshop topics are invited to talk with a Committee member (see list on page 4). OTHER BRANCHES' NEWSLETTERS As a Branch we have benefitted over many years from interesting reports and articles in other Branches' Newsletters. Not only has your editor enjoyed reading these publications, with a view to sharing their contents with you, but excerpts from our Newsletter appear from time to time in many others! Now that Parent Groups have all been re-named Branches, there are more than 100 possible publishers of Branch Newsletters. Any editor reading this - please continue to share your Newsletter with as many Branches as you can - including S.W. Thames! With notice, National Office can provide a label run to save hand-writing envelopes.

PARACHUTE JUMP

Have you always wanted to do this but haven't thought of a good enough reason? The DSA invites you and friends to help raise funds by making an exhilarating 10,000 ft freefall jump arranged by Skyline Promotions. Raise £255 - £325 or more and you jump for free. Choose one of three types of jump and the training and jump will be on the same day or over a weekend. For full details contact Ellie Walsh at National Office.

GALA EVENING

Another date for your diary - a Gala Evening at 7 pm at Her Majesty's Theatre on Sunday 1st November 1998. This occasion will raise money for the DSA and other charities and will include presentations by the Larondina Dance Company and the Alessandre Special Needs Dance School. Many readers will recognise the names of these two successful dance groups, all members of which have Down's syndrome. Amongst other stars taking part will be the musical director of Beauty & The Beast, J. Alexander, and Phil Cavill who played Jean Val Jean in Les Misérables.

Tickets will be on sale in September. Please ring Mrs. Eileen Beard on 0181 672 1761 and she will forward more information when it is available.

A NIGHT AT THE CASBAH

From all reports, the DSA Ball is a first class occasion which results in raising thousands of much needed pounds for our Association. This year 'A Night at the Casbah', where guests will meet Damon Hill, will take place on Saturday 28th November at the Cadogan Hall, Duke of York Headquarters, Kings Road (i.e. Chelsea Barracks), London, with tickets costing £85 each. Members are asked to suggest contacts for prizes (each over £10 in value) for the Gold Envelope lucky dip plus bigger prizes for the auction. Five hundred prizes are required. Full details from Sarah Waights at National Office.

DSA RAFFLE

This fundraising activity is crucial to DSA services continuing at the level we require. If you can offer a major prize, or suggest a suitable contact for providing one, please notify National Office as soon as possible. The tickets will be sent out before Christmas.

KARAOKE MACHINE

Thanks to a generous benefactor, one hundred DSA Branches have each been given a Karaoke machine. Not only will this be useful for fundraising (much needed by our Branch - Ed) but its principal use is to enable parents to improve speech, rhythm and enjoyment of music by using it for speech and music therapy with their children. Apparently tapes can be purchased which have words missing which encourages viewers to speak the missing words. Children can be recorded so that they are helped to hear their own speech. We understand it is quite noisy so please be considerate to the neighbours - or invite them in to share the fun and experience! The Branch committee will be working out how the machine can be shared by members.

WELFARE BENEFITS

Christina Katic has revised the DSA booklet "What can you claim?", which is now in A4 format. Please dispose of any booklets dated 1995. If you would like the new one, write to Vinay Kapoor at National Office.

DOWN'S HISTORY

Have you seen an old photograph which includes someone with Down's syndrome, or a reference or drawing? Our Development Officer, Rosalind Chislett, is studying Classical Archaeology at the University of Kent and has begun the Association's first collection of archive material concerned with Down's syndrome. Please let her know about anything historical that comes your way! It is known that the presence of the extra chromosome occurs worldwide and throughout nature. Its history is described in DOWN'S SYNDROME Past, Present and Future by Dr. Brian Stratford, a longstanding member and friend of the Association. Penguin Health 1988.

CHAIRMAN MARK

Our new Branch Chairman, Mark Anderson, is married to Kumiko who is actively involved with the relatively new Sutton Branch. Their son, James, is nine and has been going to mainstream school in Sutton for three years, a very successful arrangement for which they had to fight initially. James enjoys quite good health and is physically strong but not among the brightest of children with Down's. Mark and Kumiko, along with James's younger sister Emma, feel they are familiar with many of the issues that we all know and love. With their roles at Branch and local level, they feel well aware of the differing needs of families and the different ways in which people like to receive and structure support.

DSA SUTTON SUPPORT GROUP

This friendly group of parents meets at the home of Suzanne and John for informal coffee and chat every two months. If you live in the area and have a baby or young child with Down's syndrome, they will be delighted to meet you at 134 Mulgrave Road, Cheam (just west of York Road) at 8pm on the following Thursdays: 10th September, 12th November, 14th January 1999, 11th March, 6th May and 1st July. Tel. 0181 642 1045.

MERTON BRANCH

Caroline and Barry Lawless report a good start for their local informal Branch for parents with a young child with Down's syndrome. Tel. for the programme: 0181 715 4411.

PARENT CONTACTS

Our Branch Newsletter is sent to all members who are on National Office records except those who have signed to say they do not wish their name to be divulged to a Branch. Any members who signed to this effect when they joined the DSA will not be notified direct of Branch activities. By missing meetings and Newsletter they could miss the Parent Contact scheme which this Branch has run for some years. Members who would like to get in touch with other members in their locality may send their name and telephone number to Shirley Quemby. If you feel there is a need for a local parent group in your area, this is probably the best way to start the ball rolling. Contact with others with a youngster with Down's syndrome can be particularly supportive when facing difficult decisions especially as regards education. Our Development Officer, Rosalind Chislett, will assist with the formation of new local groups or Branches.

MUSIC THERAPY IDEAS

Judith Nockolds' encouraging and helpful session on music therapy at our April meeting will have inspired many of her listeners. She has now kindly sent a list of books for reference and ideas when working with young children: Pied Piper by John Bear and Amelia Oldfield, Cambridge University Press; Making Music with the Young Child with Special Needs by Elaine Streeter, Music Lessons for Children with Special Needs by T.M. Perry, both from Jessica Kingsley Publishers; Play Songs: Books 1 - 5 by Paul Nordoff from the Nordoff Robbins Music Therapy Centre, 2 Lissenden Gardens, London NW5 1PP, tel. 0171 267 4496; Learning Through Music by Gail and Herbert Levin, Teaching Resources, New York Times Company.

Alan Mayne (see committee list) offers tapes of the talks given at our parent information day on 25th April.

IEPs

A special needs support teacher, who is a DSA Branch Committee member in Liverpool, has written in their July 1998 Newsletter concerning Individual Education Programmes for children with a Statement. Targets for the year should be set at the Annual Review and the targets broken down into achievable small steps for the IEP. The IEP should be brief and action based and is pointless if it is repeated each term. Parents should be closely involved in its contents and should see progress in it.

DOWNSEd WEEKEND

A parents weekend conference will be held 5th-6th September at the Sarah Duffen Centre, Belmont Street, Southsea, Portsmouth, Hants, PO5 1NA with a particularly interesting and relevant programme. Topics will include Early Language Development (Pat LeProvost), talks and workshops covering the development of sentences, handwriting, number and memory, computers, behaviour and statementing. Suitable for families with children with Down's syndrome aged 0 - 8 years, the cost will be ±57. Creche fee £25. Contact the Sarah Duffen Centre for full programme and booking details. tel. 01705 824261 e-mail enquiries@downsnet.org Http//www.downsnet.org/

REKHA AND BABLI

When Rekha Ramachandran's daughter Babli was born, and she was informed after discovering that the baby was blind that Babli also had Down's syndrome, her world fell apart. However, she resolved to face the challenge. Finding there was no help in India she sought advice around the world, including from Rex Brinkworth MBE in England. Babli required many operations in her early years and can see to read and write and cross roads. She is now 17 and with her mother runs Mathru Mandir, the information centre/day centre/special school for all India. Mrs. Ramachandran speaks many languages and flies the length and breadth of India to provide the sort of comfort and guidance we all needed when our baby's condition was diagnosed. Her pioneering work has enabled many children with Down's syndrome to be accepted in mainstream education - unheard of in India a few years ago - and children aged 13+ are provided with the broadest possible education together, as integration has been found to be less successful from this age. Babli is the organiser of outings, sports and educational activities for residents at Mathru Mandir.

This is a summary of the illustrated talk given by Mrs. Ramachandran at the Conference in June organised by the Down's Syndrome Research Foundation. When she was asked how her work was funded she said "there is a Trust" then "my very generous husband". A delightful lady who is clearly making an immense contribution to her country's acceptance of all with Down's syndrome.

MAKATON VIDEO

There is now a home training pack available from Makaton Vocabulary Development Project, 31 Firwood Drive, Camberley, Surrey GU15 3QD, @ £113.04 inc. p&p and a training manual etc. Users of the pack also have access to a telephone helpline. Tel./fax 01276 61390 or send s.a.e. for details of the pack components which are available separately.

SIGNALONG

The Signalong Group is based (until December) at The Communication Language Centre, All Saints' Hospital, Magpie Hall Road, Chatham, Kent, ME4 5NG Tel. 01634 819915, and produces an occasional newsletter SIGNalong UPdate. This reports various interesting activities in which signs are created to assist non-readers and the learning disabled in the workplace or abroad. Trainings on signing are given and there is a list of literature.

SLEEP RESEARCH

A few years ago, at one of our half-yearly meetings, Dr. Rebecca Stores, then with DownsEd (The Portsmouth Down's Syndrome Trust), gave a fascinating presentation on sleep problems. For example, drivers who snore may have a condition called sleep apnoea which can lead to them falling asleep at the wheel. Dr. Stores has continued to work on this important subject and now wants to hear from parents. She writes: "Myself and colleagues here at the University of Oxford are carrying out a research project on encouraging good sleep habits in young children with Down's syndrome. This study is being funded by the DSA. Common problems can usually be treated but it is Dr. Stores' hope that the research will enable the problems to be prevented, leading of course, to happier children and less tired parents.

Families with a child with Down's syndrome aged between 6 months and 5 years who would like to establish better sleeping in your child or reduce the likelihood of sleep problems developing in the future are asked to contact Dr. Stores at University Section, Park Hospital for Children, Old Road, Headington, Oxford OX3 7LQ. Home telephone 01705 755083. e-mail: RStores@aol.com Much constructive help and advice is promised to the families who take part in return for "a little diary-keeping for three weeks and completing a few questionnaires".

EATING, DRINKING AND SPEECH

Scottish Down's Syndrome Association news for Summer 1998 carries a report of the work of Dorine Trimmel, a Speech and Language Pathologist from Indiana, USA. Based on the premise that feeding is a primary function and speech a secondary function, training a child (Rebecca aged 3) with Down's syndrome in the way she sucks, swallows and breathes is being found to improve the appearance of her face. Details from the Director Speech and Hearing Department, Speech-Language Pathologist, Decatur County Memorial Hospital, 720 N Lincoln Street, Greensburg, IN 47240 USA. The SDSA offer a photocopy of an article by Sara Rosenfeld-Johnson by telephoning Pat on 0131 313 4225.

BABY MUST CHEW

Babies with Down's syndrome need to be taught many skills. Vital for future speech is the skill of chewing. The introduction and acceptance of solids must take place well before the baby is one year old to prevent a rejection of solids. The chewing muscles are essential for speech.

SIGHT AND DEMENTIA

An article in the Summer 1998 edition of the Scottish Down's Syndrome Association news is written by Gill Levy, Information and Practice Development Officer, Multiple Disability with the Royal National Institute for the Blind. Ms Levy is concerned that many of the early signs of dementia are very similar to signs of visual impairment. People with Down's syndrome are prone to eye problems whether from birth or acquired later in life. It is important that people with Down's syndrome should have their eyes tested every two years. As in so many areas, early diagnosis will usually prevent deterioration. RNIB, 224 Great Portland Street, London W1N 6AA, tel. 0171 388 1266 offer a range of leaflets to increase access to eye care for people with learning difficulties.

ALTERNATIVE THERAPIES

DSA North West Thames Branch are holding a parent information day on Saturday 7th November 1998, 10 - 4, at Hillingdon near Uxbridge. Send s.a.e. to Mrs. Silver, 6 Birkbeck Road, Ealing, London W5 4ES for the programme, which will be published in September. Dr. Cornelius Ani will be one of the speakers; homoeopathy, aromatherapy and acupuncture presentations are being arranged, the latter by Elizabeth Adalian.

PORTAGE

An attractive and informative leaflet headed MERTON PORTAGE SERVICE reminds your editor that there could be some parents who have not heard of Portage. It is a Home Teaching Scheme for pre-school children with Special Needs which helps parents to know what skill to teach next with ideas on how to teach it as a fun activity. This is particularly valuable where the child with Down's syndrome is the firstborn. Access is often through your Health Visitor or the Education Authority. There could be a toy library available to users. The Merton contact is Noreen M. Boyle, Canterbury Centre, Canterbury Road, Morden, Surrey SM4 6PT Tel. 0181 646 6330.

DOWN TO EARTH VIDEO

A group of adults with Down's syndrome has been meeting in various parts of the country to create a video. They call themselves the DOWN TO EARTH GROUP. Readers are recommended to attend the DSA AGM to see the result. Saturday 24th October at the Forte Posthouse Nottingham City, St. James's Street, Nottingham NG1 6BN, close to the main railway station. The DSA Under 5's conference was held there and the facilities and staff were found to be excellent. Be sure to keep up your annual subscription so that you receive the notice and programme from National Office when these are sent out later this year.

POLISH INITIATIVE

An appeal has been received by the Branch for sponsorship and volunteers for setting up The Catholic University of Life in Lodz in Poland. The Catholic Association of Friends of the Mentally Handicapped started four years ago and holds church services, camps, visits to places of interest and art clubs etc. The plan is to open a centre in September to work towards "integrating the mentally handicapped with the rest of society", increase independence and ensure they reach their full physical, emotional, intellectual and spiritual maturity. (This appears to be very suitable for someone seeking to fill a 'gap' year - ask me for a photocopy, Ed). Anyone interested in joining this activity or supporting them financially is invited to contact their President Ms Malgorzata Kotynska at /0-42/ 636-51-51, Lodz, Piotrkowska 180 m. 22.

DSRF JUNE CONFERENCE

The main speakers at the Conference organised by the Down's Syndrome Research Foundation held at the Institute of Child Health on 1st June were members of the Warner House team. The Warner House, Fullerton, California, (a registered charity) offers a total assessment of each child with Down's syndrome and advises on the dietary supplementation suitable for each individual child. There are now 4,600 children and adults around the world with Down's syndrome who are being monitored by the Warner House. Founder, Dr. Jack Warner explained how super oxide dismutase accumulates in the person with Down's syndrome and how dietary supplementation can lessen its effects. Other excellent speakers offered constructive advice on our children's eyes and sensory system.

Your editor took notes at the Conference and is willing to send a summary on receipt of s.a.e.

VOICE UK

Although this organisation appears at first to be of interest only to those whose loved one with a learning disability has experienced abuse, its Newsletter also contains much encouraging information about work with the judicial system. Many of us are concerned that our young person could be misunderstood if in a position of suspicion or where they were perhaps required to be a witness. Voice UK, PO Box 238, Derby DE1 9JN (telephone 01332 519872) could be worth contacting for details of recent studies and publications.

GRAPEVINE

A new free magazine, The Family Grapevine, has been published in Cobham, Surrey and includes lists of playgroups and other useful information for parents in the Epsom, Leatherhead, Esher and Horsley areas. Look for it in your library or telephone Genevieve on 01372 842284.