| South West Thames Branch of | Down's Syndrome Association |
It is an unfortunate fact that neither the Association nor the Branch can function effectively without money. In this Newsletter are reports of the skills and enthusiasm which contribute to the success of our organisation. Whether you are a new parent, or have been a member for some time, please be assured that fundraising is in no way a condition of your membership. We are fortunate in having members and friends who enjoy raising funds and thank them sincerely.
THE BRANCH VIDEO
A year ago, work on the Branch video "Growing up
with Down's syndrome ... Going to College" had to stop. The great
news is that, thanks to extensive work by our director, Lou Birks, with
much 
rewriting and filming, the video is complete and was launched with acclaim
at the DSA AGM at Newbury on 13 October. It will also be shown at the FUN
DAY. The making of this video has been funded by the Branch plus a grant
of almost £5,000 from the Millennium Festival Awards for All.
Presenter Anthony (see photo) takes us clearly through the three steps towards Going to College, no matter what sort of school the student attends. It will interest young people with learning difficulties, their families and carers, teachers, college staff and students. All will enjoy this 14 minute video. See details of contents and how to order the video. A contribution of £5 towards copying, postage and packing is requested which please send to National Office at Tooting, making your cheque payable to the DSA SOUTH WEST THAMES BRANCH.
ROS AND MANDY
The Branch is indebted to Rosalind Chislett who has supported our membership and our activities with valuable enthusiasm over a number of years, the last few as Development Officer for the South East. We wish Rosalind and her family every happiness as she moves on and welcome Mandy Joscelyne. Mandy's title is Volunteer and Development Co-ordinator and, like Ros, she is there for us as well as many others in the South East. She attended our recent Committee meeting and the DSA AGM and we are all looking forward to expanding the work of the Association with her. She has a particular interest in self-advocacy - do contact her if you would like to follow this up.
CONGRATULATIONS, CALLUM!
Ten year old Callum Tolan-Baxter, who has Down's syndrome and now lives in our Branch area, with lots of encouragement from Mum, Maureen, appeared in the national GUARDIAN on 6th June under the heading: "I want to be famous!". Callum is keen to be an actor and would also like to model children's clothes. He has been accepted by an agency and hopes to be used as an extra on The Bill.
MUSIC PRIZE
Congratulations to Kieran Edmonds for being first with the right answer to a music question. He won the Pupil of the Year Award at his Primary School.
SWIMMING MEDALLISTS
Kate Powell, Stacy Johnston and David Beard, all with Down's syndrome, have again been exhibiting their swimming skills. At the end of July they spent a week in Cardiff competing in Special Olympics UK National Summer Games as part of the Greater London team (only one of the swimming team did not come from Wandsworth). They all did extremely well and brought home masses of medals.
On the 15/16 September weekend, the swimmers were in Reading for the Special Olympic Regional Championships, coming home with a further assortment of medals. They were joined for the first time by DSA young member, Patrick Walton, who has now started up his own medal collection.
PLATFORM 1 CAFE
Mrs. Eileen Beard reports the official launch of this café near Clapham Junction station on 13 September. It has apparently been operating most successfully for several months and two of our young members, Kate Powell and David Beard, have been working there for one day per week since June. The café is run by The Camden Society and gives training and real work experience, in a supported environment, for people with learning difficulties. The food is very good and reasonably priced. The café provides exceptional opportunities and we are invited to visit to see for ourselves Monday to Friday 9.30 - 2.30 pm. Find it behind Clapham Junction train and bus station at 9 - 10 Bramlands Close, SW11. Outside catering is also offered: 020 7228 2593.
KING'S FUND AWARD
Sutton's Centre for Voluntary Service Networker states the King's Fund is giving awards of up to £2,000 to individuals over 16 to help them carry out their idea for making a difference to the health of people in their community. Disabled people are encouraged to apply. Editor's note: Readers considering applying for grants for local activities in areas other than Sutton could find extensive advice at their own local Voluntary Service Centres. There are many grant making organisations offering money! For instance, for information on BBC Children in Need: 020 8576 7788.
foundation stones
This is the name of the newsletter of the foundation for People with Learning Disabilities, part of the Mental Health Foundation. It reports a project, "BASIL", which offers support and advice towards the development of literacy and numeracy skills. www.ctad.co.uk/basil.
Another project, an investigation into meeting the mental health needs of young people (teens to 25) with learning disabilities is taking place and invites contributions. Contact Hazel Morgan on 020 7535 7449 or www.learningdisabilities.org.uk
A centre page spread concentrates on "Misplaced and forgotten: People with learning disabilities in residential homes for older people". Lack of suitable activities and isolation were discovered.
The possibility of arranging for the family home to be passed to the person with learning difficulties has been studied. For the report tel. 020 7535 7412 or see the website above.
A two-year project is under way studying the spiritual needs of people with learning difficulties. To take part or for information contact Hazel Morgan on hmorgan@fpld.org.uk.
FRIDA NETWORK
This organisation aims to empower and support disabled women in London especially as regards gynaecological or sexual health matters. It is aimed at women with physical or sensory impairments, learning difficulties or other special needs. 020 7251 6333, email: outreach@womenshealthlondon,org.uk
RESEARCH HELP
The DSA is seeking babies with Down's syndrome for a scientific study to see whether nutritional supplementation is of benefit to children with Down's syndrome. The study is being carried out jointly by the Institute of Child Health, Great Ormond Street Hospital for Children and the University of Birmingham. Readers in Greater London and the West Midlands whose baby is under one year old are asked, please, to contact 020 7905 2259 or National Office for further information.
MEALS AND DEMENTIA
An article in the Scottish DSA Spring 2001 news describes the importance of nutritious food and mealtimes when someone has dementia (whether or not they have Down's syndrome). SDSA offer a double-sided laminated information sheet. Details 0131 313 3225 email: info@sdsa.org.uk or www.sdsa.org.uk
WEIGHT WORRY
A longstanding member with a son aged 31, no longer living at home, has written to us because this young man, although only 5' 3" tall, weighs 13 stone. The parents believe he is not a big eater but "everything he eats seems to go to fat". Fortunately the son has recently started to take exercise seriously but the parents' plea is: "If any family has some experience of reversing the weight trend in their son with Down's syndrome they would be grateful to know of it". Ideas to 020 8946 5944 or to the Editor, please.
EATING DISORDERS
The Eating Disorders Association has set up a branch office in London to provide help and support to the many thousands of people who are affected by an eating disorder. Such disorders are complex illnesses, rooted in psychological and emotional distress, where people use food and eating as a means of coping with seemingly insurmountable problems. Eating disorders commonly develop between the ages of 15 and 25 although they can occur at any age, and for either sex. The Mental Health Foundation has found that 20% of all adolescents have some sort of mental health problem, one of the most common being an eating disorder. For information tel. Nikki Schuster (10 am - 2 pm Monday - Friday) on 020 7332 8240.
STAMMERING
The British Stammering Association (BSA not DSA) publishes an excellent newsletter entitled Speaking Out. Although perhaps one doesn't meet many who stammer, the BSA offers a variety of ways to help those who do. In addition, they co-operated with the DSA in recent years to create Dysfluency, stammering and Down's syndrome, available from our National Office at 50p. Much research is taking place to find out why some children and adults stammer. BSA Helpline 0845 603 2001, www.stammering.org
KINESIOLOGY
An article on this remedy in a local newspaper caught your editor's eye because in the past children and adults with Down's syndrome have quite commonly suffered from alopaecia. Cures for alopaecia (hair loss) have been scarce. The article suggests that kinesiology sometimes helps to relieve this and also arthritis, dyslexia, insomnia and skin problems. To find accredited practitioners of kinesiology contact the Kinesiology Federation on 0870 011 3545 or The Association of Systematic Kinesiology on 020 8399 3215. The article is in the Sutton Borough Post of 29 August 2001.
CLEANING TEETH
An electric toothbrush has been recommended for children whose hands are perhaps less easy to control. A free paper, Parents News, refers to a product by Crest which encourages children to enjoy brushing their teeth. "Spinbrush" comes in various shapes (telephone, mermaid, racing car etc.!) @ £4.99 and apparently reaches the difficult crevices and food traps.
The newsletter of the DSA Liverpool Branch again includes excellent articles on education. There are guidelines on selecting a secondary school, emphasising the need to allow perhaps a year to do this. The writer suggests your child's annual review should be arranged for no later than the January before the move and SENCOs from your chosen schools should be invited to attend.
A report on a talk by Stephanie Lorenz states that an 'Index for Inclusion' has been sent to all schools by the Department for Education and Employment. She recommends parents ask their school how this is being implemented. One key factor is that it is beneficial for children with Down's syndrome to be placed in higher streams with well behaved children. www.dsa-liverpoolbranch.org.uk
Inclusion Now
This colourful magazine is produced collaboratively by Disability Equality in Education (020 7359 2855), Parents for Inclusion (020 7735 7735) and the Alliance for Inclusive Education (020 7735 5277) who are described as "Disabled people, parents of disabled young people and allies, working together". Twenty pages packed with encouragement, dedication, problem solving and quotes. Definitely worth reading - try your local library. For your own copy of this (Volume 2, Summer 2001) and future editions contact ALLFIE above or email info@allfie.org.uk or www.allfie.org.uk These three organisations run courses for parents, professionals and volunteers.
SUMMER SCHOOL
Inclusion Now is the title of a summer school, on how to develop good practice, planned for Monday 15 - Thursday 18 July 2002 in Nottingham. Contact Disability Equality in Education (above) or email: info@diseed.org.uk Special rates and grants available to help with costs.
TRANSITION
Much has been written in recent years of the importance of preparing our youngster with Down's syndrome for foreseen changes. The change from Primary to Secondary school is a major transition demanding much research beforehand by parents. When seeking information from a secondary school, parents are advised to check what alternatives will be available for any pupil who is unlikely to attempt GCSE examinations when the time comes.
HELP! HOW CAN I ... ?
(An occasional series which welcomes either problems or solutions from readers).
Support my child's efforts to complete homework set by his/her secondary school?
The move from Primary to Secondary school is a big step for every child; for the child with Down's syndrome it can seem immense. Much co-operation between the new school, the previous school and the family could help to smooth the way. The DSA A4 booklet, Including Pupils with Down's syndrome: Secondary, sets out invaluable guidelines in simple format for busy people. The school and the family need copies - obtainable from National Office.
DOWNSEd BROCHURES
A new catalogue and brochures on trainings on offer have been created by the Trust. Tel. 02392 824261, or email: brochures@downsed.org
EXPLAIN, EXPLAIN
Your editor has been asked for a report on her talk on independence given at our Branch meeting in April. It comprised many snippets which it was hoped would trigger ideas on ways in which independence may be developed in our children. A key to this achievement is to explain carefully, possibly many times, certainly with drawings, toys or other visual aids, to help the youngster to understand any task. Our children and young people need more explanations, not fewer, geared to their level of interest and the need for them to learn a skill. Those skills we learnt when we were young, or taught ourselves, could well be of value to our child but our child may not have the initiative to teach him or herself. And we must do our best to keep all teaching fun.
Only limited independence will be achieved if our children do not learn to cross roads. Children do not see cars as 'knockers-down' of people. Without making children deeply frightened of traffic, we have to ensure they have respect for vehicles with confidence to learn to judge speeds and choose safe places to cross. For the first few years, teach them to "stay on the pavement". "Don't go in the road" is a very complicated command. Accompany them frequently on foot and always ensure they STOP at every kerb and side crossing and the edge of a line of parked cars in car parks. Talk about the approaching vehicles and gradually lead them to help you to decide when it is safe to cross. Use trains and buses; teach timetables and mapreading. Skills learnt when young will probably remain for life.
FORMATIVE FUN
Reference to this organisation in EXTRA 21, the excellent newsletter of the DSA North East Thames Branch, could be of interest. Set up by Jane Warren, a mother and former teacher, it offers products selected to help a child learn in a multi-sensory way. There are several shops. 01297 489880, www.formative-fun.com
During Down's Syndrome Awareness Week the pupils of Dorchester Primary School, Worcester Park, Surrey, held a sponsored bounce. The school has four pupils with Down's syndrome but it was four senior girls who organised this event. Amazingly, sponsored for one minute of bouncing per child, the school raised almost £1,165. The school, the Branch and the DSA have all received a share. Reports in local papers raised awareness far beyond the school.
AUTISM
The articles in the latest DSA JOURNAL will have interested many readers. Whilst most children with Down's syndrome are not autistic, there are some common behaviours which could perhaps be related to autism. The suggestion that dairy produce may be a cause sounded plausible. Do contact the Branch if this is something you have tested or plan to test. Readers in Sussex are offered support by the Sussex Autistic Society: helpline 01273 841254, email: amandabrewis@sussexautistic.fsnet.co.uk; also the Autism Support Group - Crawley (supporting carers of over 14s) 01273 846846. For Saturday meetings of "Integreat" at Pagham, tel. 01243 266019
SELF-TALK
Many children with Down's syndrome have an imaginary friend or talk to themselves. A summary of a study on this is published in the Autumn 2001 Scottish Down's Syndrome Association news. Interestingly, youngsters who talked to themselves only in their own rooms had significantly higher mental ages than those who self-talked when with people. No evidence was found to associate talking to themselves with loneliness, poor communication or difficult behaviour. Some had stopped talking aloud to themselves after reaching a mental age of 10 - 12. It was felt it was better to guide the child to talk to themselves only when alone than to try to stop the practice.
LIMITED SIGHT?
Surrey Voluntary Association for the Blind has an excellent team and a resource centre. This centre has a wide variety of equipment and advice to help those who are blind, have low vision and have hearing loss. Their latest newsletter LINES OF SIGHT announces calendars and diaries for 2002. SVAB are at Rentwood, School Lane, Fetcham, Surrey, KT22 9JX, 01372 377701, www.surreywebsight.org.uk | email: info@svab.org.uk
A contributor to LINES OF SIGHT recommends Dolphin's website www.dolphinuk.co.uk which apparently works well with speech and has high visibility cursors.
SIGHT DIAGNOSIS
The Royal National Institute for the Blind have written a 15 page A4 factsheet, in their "Focus" series, entitled People with Down's syndrome and their eyes. Most helpful for explaining to our youngster and when watching his/her eye test. (RNIB recommends annual tests). Contact their Multiple Disability Service on 020 7388 1266 for this and other Focus factsheets.
GROUPS FOR HEARING IMPAIRED
The West Sussex spring newsletter WELLSPRING includes information on various groups open to youngsters or adults with impaired hearing. In Shoreham there is Earmark 2 for profoundly deaf parents/children under 5 who sign: 01273 26880000; Happy Faces is a similar group in Worthing: 01273 671889 or 01903 528600; also the Earmark Group in Crawley: 01293 895100. This information and more is available from ICIS, the Independent Combined Information Service on 0800 859929, email: helpline@icis-westsussex.org.uk or website www.icis-westsussex.org.uk
WELLSPRING
To join the circulation list for this informative publication, write to The Editor, Wellspring, c/o 35 Worthing Road, East Preston, Littlehampton, West Sussex, BN16 1BQ.
GLUE EAR
A talk by a specialist hearing consultant is being planned for the Branch's annual Open Day on Saturday 27 April 2002. Meantime, an article in a local newspaper recommends the sufferer should aim to drink a pint of water per foot of height to thin the "glue". This article (in the Epsom Comet for 12 October) also suggests homeopathic remedies for ear problems.
DIRECT PAYMENTS
Adults who are in need of services now have the opportunity to receive money from Social Services to enable the recipient with disabilities to choose who provides support and in what way. The Department of Health has produced a booklet, with CD and tape, entitled "The easy guide to Direct Payments". It leaves many questions unanswered but adult members and their carers should check whether this scheme will help them to achieve greater independence.
HAVING DOWN'S SYNDROME
The Autumn 2001 Scottish Down's Syndrome Association news reports on a study on 77 young people with Down's syndrome (aged 17 - 24) and their awareness of Down's syndrome and disability. Most parents had made sure their offspring knew about their condition preferring their child to be prepared rather than risk distress in future. A few felt their child would not understand and some waited for indications that the child was puzzled by his or her differences. Brothers and sisters showed awareness of their sibling's condition between 4 and 8 years old. The study concluded it is best to discuss Down's syndrome openly, watching sensitively for suitable opportunities to inform according to their son or daughter's ability to understand.
PARENT CONTACT LISTS
The DSA South West Thames Branch runs a Parent Contact List scheme (for DSA members only). To join it, however old or new your child is, please complete the form in the printed Branch Newsletter (Nr.42) (sent to members by post) and return to the editor. If you know of a friendly Play Group, Opportunity Group or similar, where parents in your area might meet friends, please complete this form too.
The Parent Contact List at present only includes age and sex of child with no details of additional special needs. We know we have members with hearing impaired children. If these parents would like to make contact with others, please let your editor know. Would readers be interested in our website being adapted to indicate special needs - to DSA members only? Mr. Ajit Mané (email) is the person to contact.
DSA LONDON SUPPORT GROUP
Parent Richard Davis, with his wife and very small daughter, joined us at our Branch Open Day in May to introduce his plans. At present the group is for parents of very young children. Members in the London area may contact Richard for more details on 020 8883 8638 or info@downs-syndrome-london.org.uk Or visit their website at www.downs-syndrome-london.org.uk Meetings are held at KIDS in WC1N. All DSA members may of course choose to join one or more Branches or Groups and we wish this group success.
SUTTON DSA PARENT GROUP
Pete and Val Morgan continue to lead the DSA Sutton (Surrey) local Parent Group and are happy to be contacted by members. The Group is mainly for the parents of children under about 10 years and meetings take place informally. To contact the Group tel. 020 8644 5446.
WEST SUSSEX INFORMATION DAYS
The West Sussex newsletter WELLSPRING refers to a programme of information days for parents and carers of children with special needs and/or disabilities. Contact the West Sussex Parent Partnership Service on 01243 752115 for details. This Partnership runs a helpline for parents, on this number.
CALVERT HOLIDAYS
The Calvert Trust owes its formation to a disabled friend of William and Dorothy Wordsworth. Raisley Calvert died aged 21 in the 1790s and the Wordsworth home later (1978) became an activity centre for people with disabilities. There are now three centres: at Keswick, Kielder and in North Devon. Each Calvert Trust house is an independent non-profit making charity providing opportunities for a variety of outdoor pursuits. Branch members who have been to these centres strongly recommend them. Tel. 01434 250232. www.Calvert-Trust.org.uk
BEING OUT-OF-DOORS
A recent report told us that parents are worried about letting their children play out-of-doors and many children themselves are frightened of being bullied, abducted or run over. The school holidays should be the ideal time for our youngsters to grow and develop in the open air, gaining fitness and independence as well as having fun with their friends. Much teaching can be given to ensure our children remember to cross roads safely, will not go with a stranger, and we all know confidence helps to ensure they can stand up for themselves. The report included an interview with a speaker from KIDSCAPE who recommend children are taught to "Run, Yell, Tell" if interfered with when away from their parents.
TRICYCLE
Your editor has been asked for a tricycle for a young lady with Down's syndrome aged 14¸ years. Offers to Shirley Quemby, please.
CANOEING
Many children with Down's syndrome are happy swimmers. There are in our area clubs and pools with kayaks. Canoeing is a particularly fun activity which is not just a reward for good swimmers but teaches a balancing skill which it is good to acquire. Look out for school holiday taster sessions or Scout Canoe Clubs.
STOP GAP DANCE
The Stop Gap Dance Company will be leading a dance project at Leatherhead during October half term. Dancers aged 14 - 24 with physical and learning disabilities will be welcome. It is hoped these sessions will lead to a new Mole Valley Dance Company. Tel. 01306 879188 for more information.
DSA AGM
Very few Branch members made their way to Newbury on 13 October for an interesting and informative day. The first presentation explained the importance of the Government's initiative entitled Valuing People which has been created following considerable input from people with learning difficulties. Whatever age our child, we must look out for the implementation of this important white paper in our area - soon.
Following the annual meeting, the Chairman announced that Branches and Groups are being asked to change their status next year. Local groups will be invited to affiliate to the DSA, benefitting both local groups and the national Association. You can be sure all services provided to individual members and families by National Office will continue as at present.
SPEAKING UP
Since the inception of the first DSA Branch in 1973 (covering the whole of the South East of England) there have always been members keen to give talks about Down's syndrome and the Association. In those days, education had only recently become available for children with Down's syndrome and expectations were still generally very low.
Members not serving on the Branch Committee but who are willing to give talks, (to school children, medical professionals, teachers, Rotarians, mothers' groups, the possibilities are limitless) please let a Branch Committee member know. It is helpful to have a list for when such talks are requested.
We are sometimes asked for speakers who themselves have Down's syndrome. Roger Quemby, who works for self-advocacy organisation People First, has accepted such invitations. Now that the Association has passed its 30th birthday, it is good that other home-grown speakers are coming forward. We want to hear from you!
THE BIG 'H' RIDE
The Association is grateful to several Branch members and their friends who cycled 60, or 30, miles on this excellent sponsored ride on 1st July or assisted with marshalling. Matthew and Ben, who both have Down's syndrome, completed the 30 mile route powering their Dads' tandems. From all reports it was a well-organised and fun day for everyone.
UTILITY CYCLING
Great news that two members are using their cycling skills to ride to the local library and shops or along the beach to a café. Well done to Ben and Lisa, helped a little by your editor to master balancing when they were in their teens. Shirley Quemby has much experience of assisting beginners and is happy to be contacted by any parent whose young person wants to learn or improve. Cycling is fun, practical, excellent for the rider's health and good for the environment.
FUN DAY AND FAIR
The Branch's series of Fun Days is planned to continue with the next taking place on Saturday 10 November, 2 - 5.30, again at Maidenbower, near Crawley. With a bit of pre-planning, the Maidenbower Community Centre is not difficult to reach from anywhere in our area and is most welcoming when you arrive. There are trains to Three Bridges, and buses, if you do not wish to drive. For drivers, motorway M23, junction 10A, is handy. See the map.
Although this is more a Fun Day than a Fair, clearly costs must be covered and if a profit is made it is the Branch that benefits. Members and your friends may like to bring suitable goods to sell. A table for your stall may be hired for £7. All goods must be sold at less than £10 each item. Please discuss your ideas with Paul or Rashné Everington beforehand. Do you have a suitable competition or sideshow? What about guessing the weight of a home-made cake or home-grown pumpkin to add to the many fun (silly?) activities already planned for all ages? All DSA members, relatives and friends are welcome.
The DSA and our Branch can reclaim tax on subscriptions and donations if you are a taxpayer. If you have not yet done so, please be sure to send your Gift Aid form to National Office. If you do not have one to hand, our Branch Treasurer can supply one.
COLLECTING CANS
We were delighted to meet the DSA Fundraiser, Dr. Ann Kenney, at our annual meeting in April. Ann asks you to let her know if you hold or know the whereabouts of DSA collecting cans. Thank you.
STREATHAM
A mother in Streatham has offered to help with a child/children with Down's syndrome. Details are with Liz England.
Saturday 10 November Branch Fourth Fun Day and Fair
2002
Sunday 20 January Branch Committee meeting
Saturday 27 April Branch Open Day at Purley
1 - 7 June Down's Syndrome Awareness Week
BRANCH COMMITTEE (contacts &
email addresses)
All officers and committee members are available to DSA members
seeking help or support.